[Pyr2]

So, I am in a sticky situation. I have had undiagnosed symptoms for 2.5 yrs which are basically coming down to first cervical dystonia and then throat dystonia. I don't have any tortion or flexing with either, just the cramps, but Im told its dystonia, what do I know. No other real P symptoms.

Anyway, here is where it gets scary. I have also developed mild sleep apnea (although sleep dr says it was probably there for years before) and now urinary issues. I am super concerned about Multiple System atrophy and am going to a movement disorder specialist in February. I read that head/neck dystonia is a red flag for MSA.

However, it strikes me as odd that I would develop a motor symptom of MSA, for 2.5 years, yet not any of the other motor symptoms, i.e., Parkinson symptoms. I would imagine that all motor Parkinsons would have shown already. I do get some sleep onset twitching and myoclonus but I think thats normal in the general population.

Just wondering if your dystonia developed before, after or at same time as your Parkinsons. Also, anyone with urinary issues? Again, did you develop them before, after or with P?

Sorry for so many questions. I am 47 and have been on this merry go round for 2.5 yrs. I have 3 children, 2 of whom are very very young, and Im very very scared. With MSA on the table, Parkinsons sounds acceptable to me.

[Tupelo3]

Originally Posted by Pyr2

So, I am in a sticky situation. I have had undiagnosed symptoms for 2.5 yrs which are basically coming down to first cervical dystonia and then throat dystonia. I don't have any tortion or flexing with either, just the cramps, but Im told its dystonia, what do I know. No other real P symptoms

However, it strikes me as odd that I would develop a motor symptom of MSA, for 2.5 years, yet not any of the other motor symptoms, i.e., Parkinson symptoms. I would imagine that all motor Parkinsons would have shown already. I do get some sleep onset twitching and myoclonus but I think thats normal in the general population.

Just wondering if your dystonia developed before, after or at same time as your Parkinsons. Also, anyone with urinary issues? Again, did you develop them before, after or with P?
me.

pyr2 about 40% of Parkinson's patients experience a form of dystonia. Some get it as a complication of treatment or progression of the disease. However, very often it is an early symptom, preceding some of the more classic PD symptoms. I developed dystopia in my foot about four years prior to my PD diagnosis. So, like everything else with PD there is no real "normal". Everyone has their own individual form with their own unique set of symptoms and disease progression.

[TexasTom]

Sorry, but you are not describing MSA. There are other things that occur, and if MSA they would have been all very noticeable by your doctor.

The incontinence is common for women in the 40's have have had children. A friend was a Urologist and said a simple surgical procedure was common that helped with that. Apenea's do occur for any reason, so not just a MSA issue.

I wouldn't worry about it at all. Recommendation is excuse and laughter with your kids.

For me, well, my family knows of my wishes to donate my brain to research. Once I am no longer using it, there is much yet to learn. Oddly enough I am not depressed, but more accepting of life and to enjoy every day.

Of course I did have a little fun letting the Anesthesiologist keep guessing during surgery as I explained to not attempt to adjust my blood pressure... and during a five hour surgery they observed systolic vary from 90 to 160 or so.

Heat saver CT shows zero plaque, very strong heart, and no other issues. Yes, Classic MSA symptom yet no plans to go anywhere anytime soon. Life is short, enjoy everyday of.

[Pyr2]

Hi and thank you both for your replies.

Texas Tom, do you have MSA or are you suspected of having it?

I hope you are right about me, but something just seems off. I have read stories of urinary problems and other autonomic issues predating MSA Parkinsons for years, thats why Im worried. The urinary issue came on overnight. The throat/oral dystonia is really scaring me and its super painful. Sometimes I can feel my throat closing off as I go to or wake up from sleep.

Anyway, I hope you don't have "classic MSA." If you do, what were/are your symptoms?

[TexasTom]

Pyr2,

The only way to confirm MSA is post-mortem, so I am not in any rush to ever have it confirmed. Rather fond of my brain, so I plan to keep it for some years.

Every evening reflect on what is good in your life, give thanks to everything you have. I always joked, family, health, roof over my head. I do not want for anything else. Well now I realize two out of three isn't bad.

Every morning is wonderful. Take it each day at a time. No need to be greedy about too much in the future. I'd love to meet my grandchildren someday, still lots of things to do and learn, but when you think of our universe being billions of years and life is just a flash of time. What an incredible time we live in, just amazing.

As to my brain, my family is well aware of my wishes to help out everyone else, even post-mortem:
http://www.parkinson.org/pd-library/...brain-donation

Tom

[cesar]

Originally Posted by Pyr2

So, I am in a sticky situation. I have had undiagnosed symptoms for 2.5 yrs which are basically coming down to first cervical dystonia and then throat dystonia. I don't have any tortion or flexing with either, just the cramps, but Im told its dystonia, what do I know. No other real P symptoms.

Anyway, here is where it gets scary. I have also developed mild sleep apnea (although sleep dr says it was probably there for years before) and now urinary issues. I am super concerned about Multiple System atrophy and am going to a movement disorder specialist in February. I read that head/neck dystonia is a red flag for MSA.

However, it strikes me as odd that I would develop a motor symptom of MSA, for 2.5 years, yet not any of the other motor symptoms, i.e., Parkinson symptoms. I would imagine that all motor Parkinsons would have shown already. I do get some sleep onset twitching and myoclonus but I think thats normal in the general population.

Just wondering if your dystonia developed before, after or at same time as your Parkinsons. Also, anyone with urinary issues? Again, did you develop them before, after or with P?

Sorry for so many questions. I am 47 and have been on this merry go round for 2.5 yrs. I have 3 children, 2 of whom are very very young, and Im very very scared. With MSA on the table, Parkinsons sounds acceptable to me.

Dear PYR2,
I think you are too much worried about your situation. You have mild sleep apnea. Has the doctor proposed any treatment such as first staying in sleep laboratory for two nights 1st night normally and 2nd night with a CPAP (Mask).
So do not worry about that. 2.5 years in many cases is too short to develop any PD symptoms such as tremor or rigidity and slowness. As to MSA your neurologist would catch that if you really had it. As to urinary issues there are many cases between two extremes. Either you have it at the beginning which paves the way for the PD diagnosis or you have it after 20 years of PD as an additional symptom certifying that you have PD by your urologist.
Just enjoy life today and do not think about tomorrow. Any other questions just feel free to post them.